When the battery of ophthalmology exams is complete and each test has essentially revealed straightforward unremarkable findings, especially in comparison to the patient’s description of eye pain, what do you do?
From even a very young age when “math” doesn’t “add up”, you are taught to double check. Look closer. Look again. Reevaluate. Throwing away, skipping or dismissing the problem isn’t an option when you sit in a math class. Likewise, it isn’t an option when you sit across from a patient and it doesn’t “add up.”
In 2004, I was part of a mass ultraviolet-radiation lighting accident during a teacher in-service training in a school gymnasium. With time, the surfaces of my eyes healed, but the pain in my eyes and in those of others who experienced the worst burns that day continued to grow and painful light sensitivity worsened. After years and multiple visits to a number of specialists, I was sent to a prestigious eye care facility for a confocal laser scanning microscopy exam of my corneal nerves. The exam was never performed and I was dismissed as needing to see a psychiatrist since my eyes looked relatively unremarkable.
It was one of the most painful moments of my life. How could they not see what felt like hot burning chards of broken glass and metal ground deep into my eyes? Pain and photosensitivity continued to escalate over time, but now it was burdened with the additional heavy pain of disbelief. I fought hard to hold on to the job I loved as a teacher and function with a smile and hope that one day my eyes and life might return to normal.
Eventually, I made it into the care of Dr. Perry Rosenthal. Dr. Rosenthal administered the confocal laser scanning microscopy exam that had been ordered years before, but never done. As the images of my nerves came into view on the computer screen (see below), it was immediately evident to all in the room that there was extensive nerve damage and signs of aberrant attempts at nerve regeneration which explained the increase of pain over time. What previously had been unremarkable in all of the conventional eye exams after the initial burns healed suddenly came into view as quite remarkable.
With a career and heart of a teacher, I feel we must not miss the lessons here. May you always start with belief. May you be willing to look and look again and again, if you don’t find an answer right away. May you come alongside your patients and, “…do no further harm,” especially with the dagger of disbelief. In the years that have ensued, I have encountered people scattered throughout the world with different causes of their invisible unrelenting eye pain (LASIK surgery, x-ray burns, chlorine burns, Hereditary Spastic Paraparesis, Sjogren’s syndrome and other autoimmune diseases, as well as many where the cause has yet to be identified). The causes vary, but all share the common denominators of severe eye pain and having been dismissed by their eye doctors. While there is yet to be complete answers to relieving debilitating eye pain characterized by the disparity between symptoms and signs, I pray for a paradigm shift throughout the medical eye community that allows those suffering to be heard and treated with compassion that begins with belief.
When eye pain and symptoms don’t add up to a neat and tidy diagnosis, instead of a reaction to dismiss, may it sound an alarm to look even closer. Sometimes what initially appears as unremarkable is really quite remarkable.
Aged matched “normal” corneal nerves My corneal nerves
This message would not be complete without expressing heartfelt gratitude to my husband Joel, Dr. Todd Briscoe and Dr. Perry Rosenthal for their ceaseless efforts to provide compassionate care interwoven with a mission of hope of finding a better way. My life has been forever changed by your care. Thank you.
Kellie La Follette